Apologies for not posting this earlier. It should have been posted on 6.4.12. We were heading out for vacation and packing took priority! Great vacation by the way.

Every morning during the school year, I make Catherine’s food for school. I carefully pour Ketogenic formula into the bottles I pumped breast milk into for Catherine for fifteen months. We’d add a nipple to the bottle and she’d suck away working on the “suck-swallow-breathe” pattern that enabled her to take the liquid gold from a bottle and eventually come home from the hospital. I remember being so proud that she could take a bottle.

The irony that we use the same bottles for her seizure diet formula isn’t lost on me. We eventually got that horrible diagnosis “Failure to Thrive” and we had to put in the g-tube. So, eight years later, I pour formula into the same bottles she sucked breastmilk from so the nurse can squirt it into her belly via the Mickey button implanted just below her ribs – “a great location” the doctor said just after the surgery.

I also carefully measure 30 cc, which is an ounce, of baby food into two of the smaller breast milk bottles. They look more like test tubes and are long and skinny. I put a sweet option into one and a savory option into the other tube, so Catherine has a choice during the school day. The therapists feed her every day at school, and she likes pear/pineapple and sweet potatoes a lot! About the only thing she doesn’t like is bananas. Have you ever eaten baby food bananas? I don’t blame her!

I put lids on all three bottles, careful not to spill the formula, which is crazy expensive and would require us to make a day’s worth of recipe all over again. Since we only get a prescribed amount in each shipment, we can’t afford to spill any, so I’m extra careful handling the bottle with the formula. As soon as it’s capped, I actually relax a bit.

School requires me to label the food – the outside of her lunch bag and each bottle separately. I label it on a piece of Scotch blue painter’s tape with her name and the type of food and the date. I actually wonder why I have to do this every day with the formula because it’s exactly the same, and she’s the only kid on the diet at the school, so it seems unnecessary to me. The school requires it, so I comply. It’s sort of become a bit of a meditative routine for me at this point anyway. And I think about Catherine and am happy to be able to do something for her each day – even if it’s as simple as making her lunch. All across America, moms are up early making lunch for their kids. It’s normalizing for me.

And then it hits me, as I write the date on the blue label this time: 6.4.12. Catherine’s Coming Home Day.

No else thinks about this date. Others remember her birthday. A few even remember approximately when she was supposed to be born in May. No one thinks about the day that was frankly the most miraculous of all – the day we brought her home from the NICU, 121 days after she was born. It was four months to the day after my doctor pulled her from my body and we started to hear the refrain, “We’ll just have to wait and see.” I kind of like it that way. No expectations. Just a quiet hush when we think about it. That moment feels like our special family secret, in a good way. Like when I was pregnant during the first trimester and only Brian and I knew.

When Brian woke up, I mentioned it to him, “Today is the day Catherine came home.” He looked me in the eye. We just gazed at each other. And without any words, we both knew what that meant to us.

Hi, I’m Ellen

I’m just a mom making my way, but my way is a little different. And yet, very much the same. I have a 13-year-old daughter, Catherine, who was born at 25 weeks and weighed one pound, nine ounces. Despite a very severe brain bleed, she lived and inspires me every day with all she works so hard to do... Read More…